Caring for a child with retinoblastoma: Experience of Ethiopian parents

Abstract

Objective: This study explored the lived experience of parents of children with retinoblastoma. Design and method:A phenomenological qualitative study design was used, and a purposive sampling technique to recruit parents of children with retinoblastoma.Semi-structured interviews were conducted to document the lived experience of participants, who were asked to narrate their experiences caring for a child with retinoblastoma, thinking back to the day they learned about their child's condition, as well as their thoughts about the future. The interviews were conducted in Amharic and Oromo language, and audio recordings were transcribed and translated to English. Data were analyzed using thematic analysis. Results: Thirteen parents (seven mothers, six fathers) participated in the study. Collectively, the children of the participants represented all the stages of the retinoblastoma journey (i.e., diagnosis, treatment, remission, and recurrence). Five major themes emerged from the thematic data analysis: (a) reactions when learning the child's condition; (b) receiving health care; (c) costs of caregiving; (d) support; and (e) uncertainties. Conclusion:The lived experiences of parents of children with retinoblastoma revealed a significant mental health and psychosocial burden. The sources of mental distress were found to be complex and varied. Holistic care for retinoblastoma should include programs that address the biopsychosocial needs of caregivers.

Experiences of parents of children receiving immunotherapy for neuroblastoma in China: a qualitative study

“…The results of the current study show that limited knowledge about immunotherapy was the main reason for parents' worry and fear,which at least partly, could be explained by insu cient physician-parent communication.. Our ndings also resonate with previous studies on patients dealing with retinoblastoma and encountering new medical interventions [22][23] .Study participants expressed a desire for more detailed communication from the physicians regarding immunotherapy.Therefore,medical professionals should give more intuitive knowledge relevant to immunotherapy treatment when patients are doubtful about it. And these negative experiences might be alleviated with empathetic communication methods that ensure parents have understood the necessary information [24][25] .…”

Current screening and diagnostic approaches of retinoblastoma in limited setting

“…A pilot study introducing 'FOREVER' (focus on ROP, eye care, vision, eye cancer, and rehabilitation) programme in India screened 1021 presumably healthy infants shows an abnormality in 48 babies in which 0.9% require medical or surgical intervention [26], thus providing promises to be superior as it could also detect more peripheral lesions [33] but its notable high-price and limited portability enact other devices such as PEEK (Portable Eye Examination Kit) and iCAM [32][33][34] but lacking in the objectivity as the images need professional interpretation hence teleconsultation was introduced for accurate interpretation [34]. As parents are most of the time the first to notice any abnormalities of the eyes at home [38], a smartphone-based application comes in handy assuming at least 1 smartphone is owned by a family member; CRADLE [ComputeR-Assisted Detector of Leukocoria] and 'MD EyeCare' were later developed [39][40][41]. However, MD EyeCare also presents one notable drawback as it is only provided on iOS at comparably higher price smartphones.…”

Role of nursing care after retinoblastoma surgery in children: A narrative review

“…The child's and their family's emotional well-being remains a focal point during follow-up care [34]. Navigating the diagnosis of retinoblastoma, the rigors of surgery and treatment, and the ongoing journey can impose emotional demands [35,36]. Consequently, follow-up care includes sustained psychosocial support to address the emotional aspects of the journey, encompassing counseling, resources, and guidance to assist the child and their family in coping with the emotional impact of retinoblastoma [37][38][39].…”